Friday, July 15, 2016

How are you doing?

I confess, whenever anyone says to me, "how are you doing?", my initial thought is like don't you read my blog? But then, I remind myself that a) my posts are ludicrously long, b) people are busy,  and c) I have been so focused with keeping up with my race reports that I haven't actually talked about how my health is, how we're doing in NC, and how we're wrestling with the basilisk monster that is ALS:

Photo cred:
So this post is to remedy that oversight...

I am awesome. Every single day contains sparkling gems of why it was absolutely the right decision to move to NC.

Luke & me. Photo cred: mama Cathy :)
Take Tuesday: my dear friend Cathy and our godson Luke were visiting because they just moved back to Charlotte. We hung out in our apartment complex pool until it was time for them to leave and my dad (who rearranged his schedule) and I went to the van store for service. Then he took our recycling for us (b/c our brand new apartment complex is actually from the STONE AGE and doesn't recycle). I did a 2-hour call with ambassadors, worked on this post while waiting for DP to get back from our fabulous, 10-minutes-away gym so we could eat the dinner he fixed before he MD, he would have just been getting home from work on the Metro by then.

I sleep great. I swim 3x a week with my mom/dad or someone else. I have so many friends around that DP asked me (gently) "um, when do you think our social calendar will slow down a bit?" Oops.

So yes, it was the right decision to move, even though we miss our friends and family in the DMV.

I am weary. While I usually have the NPR app going at all times, I've had to turn it off this week. The world is just too horrifying right now. Yes, I know it's important to talk about race, terrorism, and what's causing the violence, but I just can't take the ongoing coverage or imagery of baby strollers crushed by trucks and the live streaming of people bleeding out. My heart just. can't. take. anymore. I'll tune in again (hopefully) when the violence dies down (hopefully) and thoughtful dialogue commences (hopefully).

[I remain up for any conversation involving beer, chocolate chip cookies, our complex pool, games that fling whipped cream, or FaceTime.]

I am fired up. I am trying to redirect my time and energy to things that I can (at least somewhat) control to make my corner of the world better. The Ales for ALS events have been great fun and given me tons of ideas for next year.

I hinted about coming excitement involving Team Drea -- DP and I actually have a bunch of projects in the works that we'll be rolling out over the next few months.

Here's one hint: You should plan to come to Raleigh to run or spectate City of Oaks on November 7-8. That'll be my 12th race of the year, the last one for the season, and we want to celebrate the journey with Team Drea (all of whom have been on their own journeys) and all friends & supporters who can make it.

City of Oaks 2015
I am progressing. This is usually what people mean when they ask "how are you doing?" My ALS is  still progressing bit by bit. My speech is a little harder to understand, voice a little weaker. I look to DP to tell long stories. My toes drag more. I feel twitching in places I didn't before (arms, fingers, stomach, lip) -- it's not constant and not painful, but it sure is depressing. My body is reminding me that time is running out, twitch by twitch. It sucks.

That said, my swimming technique is better than ever if you ignore the fact that I'm not really kicking. My arms are better, my breathing is mostly even, and I can swim for as long as I used to take to swim 1.2 miles (~42 minutes). But now, I'm only swimming ~600 yards. I so don't care, it feels amazing.

My breathing is somewhere between 93-98%, which I attribute to the swimming and thankfully slow progression. This is the best news of all.

My quads and calves are still strong thanks to the trike (and continuing to walk with the walker, however slow). I was happy that I could power through the gravel at the 17.76k. My handcycling is on hold as I wait for new, smaller hand pedals so I can shift more easily. It's too damn hot to handcycle anyway ;)

^^I just realized I started with ALS symptoms and morphed into triathlon "symptoms" -- I love this so much I'm leaving it.

I am grateful. For my life.

Happy Friday!

Monday, July 11, 2016

Race for Matt Bellina: Part 2

Photo cred: Competitive Imaging
Independence Day Classic 17.76k (get it?) Race Report

The race honoring Matt Bellina was part of our trip to DC for the Fourth of July long weekend. 

The race was on Saturday but on Friday, Hardywood Park Craft Brewery in Richmond, VA held their second annual Ales for ALS event featuring Andrea's Ale -- so of course we had to attend...besides, all the best races begin with beer, right?

Ales for ALS is a very cool fundraiser: Loftus Ranches & Hopunion grow & donate hops to breweries that then develop their own craft beer and donate $1/pint to for research. For example, here's Hardywood's description of Andrea's Ale: "Fresh mango brings a refreshing tropical character to this session pale ale." Which sounds like a perfect description of me -- especially when you add DP's favorite part that it's only 3.7% alcohol...befitting for the lightweight I am ;) 

We've come to really love these fundraisers -- it gives us a chance to hang out with friends living in the area and we always meet new people living with ALS or loved ones touched by the disease. Thank you Elise, Shannon, Katie, Jo, Lo, Michelle, Anne, and Brea for making this event special and a HUGE thank you to Eric, Patrick, and the Hardywood crew for raising $3,000 for ALS research!!!

Photo cred: Katie Nicholson
Race Day

The 7am start time meant we were up at 5am, since we were a half an hour away and still had to do packet pickup. The 17.76k (11mi) race was held at Shirley Plantation, a 700-acre farm sprawling along the north bank of the James River boasting to be America's oldest family-owned business (est. 1613). Entering the property, we passed fields of corn and soybeans, then rows of grapevines and a winery.

It was all pastoral and lovely, steeped in history, but I was fixated on all the ROCKS. Everywhere. The race director warned me that most of the race was on hard-packed gravel and I'd seen a caution that runners should be on the lookout for rocks. Yep, rocks all over. No PRs today. At least it was flat...

I hadn't been given any special instructions on where to start so I seeded myself in Corral B for runners slower than 8:30. I hugged the right side of the gravel road to stay out of the way, but quickly discovered that the soft sand on the shoulder was far more problematic than the rocks. The trike wheels sank in and my quads started working hard. Too hard to keep up for 11 miles. Umm, can I do this? I felt the momentum of the race passing me and pretty soon I was back amongst the race walkers. 

Just when I was really starting to worry, we reached pavement. Whew. I switched to the left side of the road and began passing people. If I was going to need a bunch of extra time to deal with rocks, gravel, and sand, I figured I'd better gain some ground (ugh, pun) while I could. Fortunately, the race pack had stretched out by then and it was easy to skirt around runners.

I pedaled up next to a small contingent of military servicemen carrying a large American flag and a small sound system playing marching cadences. I gave them a huge smile and a thumbs up, then wondered sadly for the millionth time why ALS isn't more of a priority for military spending, considering veterans are twice as likely to be diagnosed as the general population. 

Jay Smith wrote a shocking column in the HuffPo last November about everything he’s learned from Matt Bellina, my honoree for this race. You should read the whole article to understand the outrageous way we are caring for the veterans who have protected our freedom, but here is the most jaw-dropping fact Matt told Senator Lisa Murkowski (R-AK, a great ALS advocate):

"I honestly think nobody has looked at the costs. The Muscular Dystrophy Association (MDA) estimates the total for all federal programs for ALS care is costing taxpayers $350-$450 million per year. You compare that to the $7.5 million spent on annual research and it really makes you wonder who is calling the shots and why they are still employed."

That’s right: at $450M, we as taxpayers are spending ONE percent of the money we spend caring for veterans with ALS on the research needed to end the disease forever.

I said a silent prayer that these servicemen with the flag will never know the ironic tragedy that is ALS, and pulled ahead. The course turned left onto the Virginia Capital Trail – a new (completed in 2015), 52-mile trail connecting Richmond and Jamestown. I’d never even heard of it but wow, it’s beautiful.

I spent the next few miles with the same group of runners, coasting past them on the downhills only for them to catch me on the uphills as I slowed to practically a standstill, dialing back to my granny gear and hoping I had enough strength to reach the top without asking them for a push. We kept saying to each other things like, “you got this!" "you’re awesome!" and "keep at it!” I love race angels – people who just come into your life for only a few critical minutes when you bond over encouragement you both desperately need, and then you part ways forever, never even knowing their names. But when you remember and talk about the race, they always reappear.

Photo cred: Competitive Imaging
That’s another reason racing means so much to me. People who haven’t been there don’t get it. Like the guy in the recumbent trike forum who said I should “just ride my trike around the block” when I asked for suggestions of trike-friendly races. “Why would you even want to do that? You’re not a runner anymore."

Eff that guy. He’ll never understand. But the people who manage these races should understand. That’s why I’m not giving up on my quest to make it easier for disabled athletes to participate. I haven't said much after my rant on FB, but I haven’t given up on it. It’s not the life and death kind of advocacy that Matt Bellina is engaged with in Right to Try, but it’s about leaving the landscape better for future generations...with a healthy dose of selfishness about improving and lengthening the time we have left. Hey, it’s the only life we get and we don’t have time to waste.

The paved part of the race was an out and back, but the pavement ran out for good in Mile 7. Along with the shade. While the morning started out cool and foggy, that had long since burned off and July was in full force. I got a quick kiss from DP around 7.5 when the course reached the point closest to the start/finish area before shooting out for a long loop along a gravel farm road for the remaining 3+ miles. He told me later that a bunch of people just dropped out there and started walking towards the burgers and hot dogs because it was just that hot. 

A short time later, I had some trouble climbing a little hill. It wasn’t very steep, but I didn’t have any momentum on the gravel. The tires skidded and the back fishtailed as I fought my way up this dinky hill as sweaty runners chugged past. All in all, it seemed like a pretty fair race for running v. trike.

Photo cred: Bellina family
As I slugged my way through those last few miles, dodging the ever-present rocks, I turned inward to say an ardent prayer for Matt Bellina and his family. I prayed for Matt to keep his strength and determination as alive as the day he woke up and decided that “this thing wouldn’t beat me.” That conviction comes from his steadfast promise to be there for his sons, JP and Kip, as long as he can. He does what he does for them, but since that means taking on the behemoth of Congress and the FDA, then that’s what he’s going to do. As he told me, “I have learned that I am much more than my arms and legs, or even the air in my lungs.”

That’s what we’re counting on. Thank you for your service to our country, Matt – in the past and the present. I hope that the government willing to send you to war is honorable enough to allow you the option to try to save your own life.

Time: 1:59:15 (avg. 10:49/mi)
Photo cred: Competitive Imaging

Friday, July 1, 2016

Race for Matt Bellina: Part 1

This post is part of my 2016 quest to do 12 races to honor people with ALS who have been inspirational to me. This is Race #5.

"It's like a slap in the face
Especially since he's a veteran
Okay, you wanted him to strap a rocket to his back
And fly around defending the country...
But now, when something's wrong with him
You're like 'sorry, it's too dangerous for you to try that.'"
--Caitlin Bellina, Matt's wife

Here's the thing with ALS. You get it, it's terminal in 2-5 years, and then you discover all the other injustices that exist because people are too busy dying to make a fuss about them. And so they continue.

Matt Bellina was diagnosed with ALS in 2014 at the age of 30. He had been a naval aviator based at the Naval Air Station on Whidbey Island in the Puget Sound when he could no longer ignore the twitching and loss of coordination. After he was grounded, he continued to serve in an administrative capacity until he was medically retired with a rank of Lieutenant Commander. Matt, Caitlin and their two young children then relocated to Pennsylvania to be closer to family.

As you learn in the VICE documentary on HBO, Matt's symptoms date back longer (as early as 2006) which excluded him from clinical trials. That doesn't stop him from seeking anything remotely promising to prolong the time he has with his family.

"I've got a basement full of crap I've tried," I've heard him joke on conference calls.

But recently, Matt got serious and became one of the prime movers in the current Right to Try movement on Capitol Hill.

Now before we get into politics, let's establish some baseline facts: 
  • People with a terminal illness, by definition, will die soon anyway. It's not just ALS -- some cancers, Parkinson's, Alzheimers, Duchenne's, SMA, etc.
  • It takes somewhere between 7-15 years to get a drug through the FDA approval process.
So if we are going to die anyway, why not give us access to experimental drugs that are already in clinical trials? Or are already approved in other countries? We're going to die anyway, so let us take the risk. At least give us the choice. Given the certainty of death on one hand and the chance of living on the other, wouldn't you want the choice? What if it was your child?
  • This argument makes so much sense that 32 states have passed Right to Try legislation -- mostly by unanimous vote.

    Okay, now the politics (deep sigh)...except that I don't really get the politics here. The senators and congressmen that have signed onto S 2912 / HR 3012 are mostly Republican. I can see that -- less government oversight/bureaucracy, more individual freedoms.

    What I'm not seeing is the opposition on the Democratic side. There's just radio silence as far as I can tell. The governor of California vetoed his state's Right to Try legislation because he said that the FDA's "expanded access" (aka "compassionate use") program was sufficient to give patients access to unapproved drugs for serious illnesses. Upon patient complaints that the process took months (which for a terminal patient is much of the time they have left), the FDA "streamlined" the process and Gov. Brown wanted to wait for the streamlining to work (while more people die).

    Now, I'm about as liberal as they come. I get self-righteous with the best of them when it comes to being pro-choice and how I don't want the government telling me what to do with my body...hey...wait a second...

    Deep sigh. Seriously, if someone finds a great argument against this legislation, send it to me and I'll be happy to discuss it here. All I can find is this Boston Globe article about how that's not the whole picture.

    What you can do: if you are so moved to contact your congressional representative, here is a handy guide to who to email or call, along with talking points for what to say. Next week (7/5-7/8) is critical in the legislative calendar.

    Up Next

    Race #5 is tomorrow, the Independence Day Classic 17.76k (get it?) in Charles City, VA. 17.76k = 11 miles, btw. I am doing this race in honor of Matt Bellina, Frank Mongiello, their children and families, and everyone else who is fighting for the freedom to try to save their own lives.